REAL LIFE: “I became the mother of a child with a rare disease – in my fight to save him, I started to lose myself”
A Brisbane-based mum on the importance of self-care.
By Adele Maree
Four and a half years ago my world was turned upside down. I was the mother of one healthy six-year-old boy when my second beautiful son was born.
Only it wasn’t long before I started to discover that he was not as healthy as his elder brother. Their lives would not be anything alike, and mothering as I knew it would never be the same again.
I would not get to watch him play soccer each week. I would ‘get’ to watch him work hard in therapy. I would not be inundated with birthday party invitations, but rather overwhelmed with appointment letters from doctors.
A shared hotel room on holidays would be replaced by a very small room, for a very long time, in the children’s hospital. Instead of being able to get excited for his first haircut I would be terrified, holding him as his hair was shaved in preparation for brain surgery.
I became the mother of a child with a rare disease and I was so busy fighting for my child’s needs that I was neglecting my own.
In my fight to save him, I started to lose myself. I struggled with my physical and mental health.
The back pain became too much, the anxiety overwhelming. I was lost in darkness and needed to find not just a way out but a way through.
A way that would allow me to not only care for my two boys but also care for myself.
Adele on staying strong through the toughest of times.
I started on a journey to stop being so selfless and start putting my oxygen mask on first. I began to exercise (slowly at first), practice mindfulness, eat well, drink less, cut back on coffee.
I learned to be vulnerable and acknowledge my mental health issues in seeking out help. As I did this I found myself being able to cope better and better able to accept living with constant uncertainty.
As I started to experience less darkness and greater optimism I began to give myself permission to hope and dream. I became more open to allowing pain and joy to co-exist.
I discovered that even in the toughest of times we can find the most unexpected beauty. But that beauty only became visible through dedicating time to look after myself.
Putting self-care first, Adele says she, “began to exercise (slowly at first), practice mindfulness, eat well, drink less, cut back on coffee.”
Without self-care I was too angry at the world to really see the gift that had been given to me.
Without self-care I would have become too tired to hold him long enough for his pain to ease and to feel him relax into my arms.
Without self-care I may have been too exhausted to appreciate the smiles he gave me at 2am or his special way of asking for ‘more’ kisses.
Self-care has allowed me to be grateful for every moment.
Self-care has allowed me, and we as a family, to keep on living, while we move toward a more certain outcome.
